Tuesday, February 28, 2012

Stinky boys and secondary schools

It was an emotional morning of appointments with aspie boy.  We met the psychologist who originally diagnosed him with Asperger's in 2009 - how long ago that seems, and how innocent I was then about the implications!  And our appointment was with the doctor who had admitted my son to the local hospital on that dreadful day in September when the lack of help for my son finally resulted in a crisis.  The doctor was delighted to see my son on a normal day, and the link between his anxiety and his anger issues was agreed.  The verdict? As you were, for the next while anyway.  And a follow up appointment in four months, so I feel vindicated at last.  He's being monitored.  They believe me.

Before the Asperger's diagnosis
Probably just as well, as Asperger's has been harder to handle since Christmas.  He's just been 'difficult'.  Almost everything is a battle, and then something you dread trying to organise is easy.  So he's being unpredictable too, and that is also stressful.  His anxiety levels are still high: he is terrified of catching something, that every bug is lethal, and every cut will cause him to bleed to death.  He has also been complaining of tiredness since Christmas and using it as an excuse to opt out of everything at school and home.  But there is no sign that he is tired, and I was delighted that the school has persuaded him to give up saying 'I'm too tired', for Lent.  Now that's the kind of sacrifice that could have really positive results!

So that leads me on nicely to the second appointment, a meeting with his new teacher.  Nice things were said, but some other stuff was not so good.  It's scary.  He is supposed to be starting secondary school in 18 months.  A lot of progress needs to happen in that time if he is going to be able to cope.  And how to choose a secondary school?  I have had very little help indeed with this dilemma.  You would think that I was the first person ever to query where to send a child with Asperger's and a high IQ.  

Earlier this evening

So far the only good advice has been from his school, from Irish Autism Action and from my pal Jazzygal.  As Jazzy says, I need to find the right school for him that will help him to survive and thrive during  those crucial teenage years.  But the local schools for kids with Asperger's are not highly academic, and the academic schools do not have so many resources for kids with Asperger's.

Do I prioritise the Aspergers or the academics?  I just don't know right now, but a decision will have to be made soon. And even if I find the 'right' school, there is also no guarantee that he will get a place...

If you have any good advice, I'd love to hear it.  

I've saved the good news till last.  I have an obsession with preparing for the teenage years well in advance.  With Angel I wanted to find the right school and encourage her love of sport, to keep her busy and away from less desirable teenage activities as far as possible!

With my son I'm working on the school and sports goals ...  but I have another big worry too.  Teenage boys can be smelly and careless about hygiene (although I don't remember this? Do teenage girls lose the use of their noses for a few years?) and that is something that worries me.  Finally last week he started taking daily showers, on school days at least.  It's taken many years to get to this point.  There was the decision of bath versus shower, then morning versus evening, the right brand of shower gel (the orange one from Lidl in case you're interested).  I started with one shower a week, and added an extra day for each birthday.  His 'tiredness' (and mine) was used to move the shower time from evening to morning, and his anxiety about bugs was ruthlessly exploited by me to persuade him that daily showers would be healthier.  Now I just have to keep it going....

28 comments:

  1. Ohhhh, we are living parallel lives right now. Mine is ever so tired and uses it as an excuse for everything. I've manipulated it and when he is good and I say lets go to the ice cream shop and then say, "But wait, you're too tired...maybe some other day...." Amazing how he perks right up. I've been trying to use that as a format to teach how "tired is probably not what he's feeling.

    I think it's something to do with this time of year. It's so blah--almost like there's not a whole much to look forward to, like Halloween or Christmas and the grind of school is growing thin.

    I'm not sure about schools--I'd say go with your gut and what he wants and what you think will help him in the long run. Sometimes we overlook what our gut or first instinct tells us what to do and we wind up fumbling. Either way, I feel your pain. I's not an easy decision and our son's anxieties and worries make it all the more strenuous. Hugs.

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  2. Recently was at gp and boy was along for the visit. Could have quite cheerfully killed the doctor when he said you don't need to shower etc everyday, it's hard enough to get boy to clean himself already!

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  3. @Lizbeth - Ooh I like the ice-cream technique, I'll definitely steal that :) On the schools, I don't have a gut feeling yet, just hoping I'll get one before I have to make a decision about which school to go for - and that is not too far off!

    @liveotherwise - Oh no!

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  4. Sounds like Son2 as well. Re schools - I don't know the Irish system, but we have found a great school for boys that caters for bright boys with LDs like dyslexia and ASD. Mainly going well - they've been there for 4 yeas now.

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  5. It's a shame that you have to choose between high academics and suitable resources for your son!

    Would you consider perhaps supplementing his school work with special classes on Saturday for intellectually gifted children? I know DCU run super courses for bright children from a young age, and I'm sure there are similar courses running elsewhere. It might be too much with Monday to Friday school hours, but from what I've heard it's quite a relaxed environment!

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  6. Wow, choosing schools and navigating boys through teenage years are hard enough but I can't imagine what it's like when autism and a high IQ enter the equation.
    I'm just so shocked that parents are left to negotiate this minefield on their own. Why isn't there more help/advice/guidance?
    We have friends who have had to fight hard and wage a campaign to get classroom assistance for their girls who have special needs.
    Amazes me there isn't more specialist help out there.

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  7. The teenage years with my non-autie son are *cough* challanging...I am considering starting heroin before my autie son hits the big 13.
    School is a huge issue and I will be watching with bated breath to see how your dude fares. Thank God for advice from the likes of Jazzy and IAA...you'd be a long time waiting on it from the "authorities" XXX

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  8. I'd say look for a school which caters well for the Asperger's - the academia will automatically be catered for. Better to be a big fish in a small pond. If the school don't understand ASD then the lack of tolerance and high expectation could add stress for you both. Teachers in specialist fields love a high achiever, they'll put in extra work to ensure he is being mentally challenged (I reckon). Just look for a head who understands Autism, the heads and deputy's at the SPECIAL schools I worked with had no understanding whatsoever.

    Good luck!

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  9. @specialneedsjungle.com - I would love something
    Iike that for my son, but I don't think it's available in Ireland.

    @Lady Grey - he started at DCU a couple of years ago and loves it :) he's studying Japanese this term!

    @Donna - I know, it's mad

    @Jean - yes I think I could be in for a rough ride too during the teenage years with my aspie boy...I've no idea how I'm going to survive them!

    @LUCEWOMAN - before Christmas when I got a glowing school report I was all for getting him into a highly academic school, but I've realised that his periods of 'good' behaviour all tend to end at some point, and lots of schools would not be able to cope with that.

    Thanks for all your comments - so far almost everyone here and on twitter and Facebook thinks I should prioritise the aspergers xx

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  10. Your shower story is a stellar success! On the typical-teen-boy spectrum ours took to hour-long showers - a possible result for a germophobic teen. Not bad but in the negative, being ready on time was an issue and the water bill...

    Can you allow yourself to reform the question of choosing between academics and an accepting school to which of the two will be first? I believe it is easier to complete academics beyond high school age than it is to complete those social/communication/emotional skills after high school. Aren't his academics already exceptional?

    What LUCEWOMAN said.

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  11. I had the tiredness thing too - but then I read that my son has to work harder - or his brain does - than a child without asperger's. They genuinely are more tired. My son goes to bed without much prompting for me, usually even now before 10pm, often at 9pm - and he is almost 17. He gets exhausted. However, he doesn't lie in in the usual teenage way.

    As fot the washing - fairly normal, they are either cleanliness freaks or smelly little wotsits, and the breakthrough only came when he got interested in girls and I told him that no girl would sit near him if he smelt, and that was also a good way to get him to deal with using a spot cleanser.

    Schools - well, ours is a musician, we had to go for one that had a good music programme. In the end we went private, which has almost bankrupted us, but he is in small classes and loves it there. A*s for music and music technology, D4s for maths and physics at AS level mocks so far!

    We had him tested 4 years ago, and have had no help whatsoever from anyone. The waiting list for testing was 2 years long, so we paid the £500 ourselves. The tester refused to even write the word aspergic on the appraisal, saying that he thought it wrong to label a child. I wanted it in the appraisal, as we would then be able to claim for any specialist requirements at Uni (If he bucks up a bit!).

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  12. @Barbara - once again thank you for your wise words. I'm so glad I put up this post, some of the best and most considered advice I've got.

    @janerowena - your son does sound very much like mine in terms of his sleeping habits :) Glad he's now clean too and very interested in your school choice. I have a private school on my list, which does provide help if you cannot afford the fees, but I'm not sure it is the right choice. Glad it's worked out for you x

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  13. My gut feel when reading your post was to advise that you look at a school that is more suited to Asperger's. Then I read your comments and they were along the same lines as my thoughts!! :)
    If you push for the academics and the school can't cope with your boy, then the situation could get out of hand. Best to think of your son's emotional well being.

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  14. @Di - I'm starting to think that too, thanks for commenting x

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  15. Lots of good news mixed in here Blue Sky:-) Hopefully the next 18 months, with help, will improve things.

    That is SO difficult on the school front. Do trust your instinct on 'the feel' of the school. If it feels right go for it. Check what's NOT available for him in that school, how absolutely crucial it is for him and then how you can provide it another way ;-)

    I have lots of links that I have to check out and share which may or may not help you. BTW, these links I got from the community HSE psych ;-)

    Lucena are repeating that 'Get Sorted' organisational OT course inthe Plaza Hotel, Tallaght (I think...I'll post the link again)on 12th March. I highly recommend it.

    Thanks for mention:-)

    xx Jazzy

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  16. There was a boy at my son's school who was intelligent but far more heavily aspergic than my son, and the school coped very well with him. I would ask the school if they feel they could manage. I my son's case, he has no short-term memory, so forgets to go to classes, eventually ends up with a detention for either not going to classes, or for not handing in his preps. (which he had donem just not bothered to hand them in, usually because he couldn't remember A where they were or B if he had handed them in or not) I have turned this to his/my advantage though - detention is, in effect, a supervised prep time, which means that someone else has to sit over him, not me! It was amazing how many preps he could complete on a Friday night - I am rather sad that he doesn't get as many detentions now!

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  17. @Jazzygal - thanks again for all your good advice: I plan to stalk you on this issue for the next 18 months :) Hope that is okay :) xx

    @ janerowena - detention becoming a form of homework club? Yes I can see how that could work very well :). Btw do you have a blog, because I will pop over if you do x

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  18. Hi Blue Sky; I'd go for a school that is geared up for the aspergers first. I'd also look for a school that has can deal wih anxiety/mental health issues; not all schools are good with this. My son's school specialises for children with ASD (moderate to higher functioning end). There is a mix of ability with some children being very able and sitting GCSE's at the age of 16. It is unlikely that they would be sitting those exams though without being in a specialist school.

    Good luck. Deb

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  19. finding the right school will have you always second guessing yourself and others up to the point you make a decision and then - or so i've been told by others - you will probably continue to question the decision... (i think that's what being a parent is all about!)
    finding a school that is geared up for his aspergers is probably the way to go, with additional support from teachers, family and yourself if he needs more stimulation.
    we've just had to choose a primary school for N and had to base it on e's needs - it was a hard call and i still wonder if we have made the right decision. however, i am glad that we have options available to us.
    good luck in making your decision
    x

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  20. @Deb - there don't seem to be any specialist secondary schools for children with aspergers in Ireland. There are a handful of schools that are supported with services (OT, SLT etc) although the children may be on a waiting list for the services. Or they can go to a mainstream secondary school with perhaps some access to an SNA/resource hours and maybe their own room and perhaps a SEN coordinator. But no services.

    @ever hopeful mummy - I'm so glad that you feel that you have options :)

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  21. Nothing to add really blue sky, think it's all been said! Don't envy your decision though. I'm looking at schools for H at the moment (he's only two but they are starting the statementing process so I'm trying to get ahead of the game!) and it terrifies me. Good luck, I am sure you will make the right decision. X x

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  22. @LittleMamma - Aww, thanks for your comment and the best of luck with your search too xx

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  23. Oh..we are looking at middle school for Oscar next year. It is different in the States-you go to the school that is in your town or you pay for private school. I wish you all the best luck in choosing. I wish I had some sage advice to give you...

    Fabulous on the showers! THAT is something I feel like I am constantly battling over with my two boys..I can get them in...but the actual washing of hair is the challenge! and heehee..yes-you make a good point about teenage girls and their sense of smell!

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  24. @kathleen - who knew you could derive so much satisfaction from clean children?

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  25. great news on the shower front - suspect I'll be following your pattern on that in years to come. The bit in your blog which really caught my attention is that fact that, no, I'm sure you're not the first person wondering where to send their son with Aspergers. It's just crazy that there is no one place to go to for proper advice and help on one of the most important issues we face! It's like scrabbling round a forest all alone - painful and slow. But sure you'll get to the right decision in the end, gut feel counts for a lot x

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  26. @Steph - Thanks so much for 'getting' it, the lack of real help and advice makes our job as parents so much harder x

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  27. We've been sorting out school for September and similar academic versus less academic (but said to have more resources as a school with 'disadvantaged' status. He'd got a place in the more academic school but we weren't sure what was in place for kids with aspergers, the school did not have a great reputation re: 'pastoral care'. However on further investigation and through correspondence with the school we discovered two individuals that are the special learning resource contacts. I've met with one of these and am thrilled now. It helps that she has a child herself with special needs and totally gets the challenges that my son will face and has arrangements to support with organisation, mental overload/frustration etc. More than systems I have found that finding a key person in the school who is both intuitive and has the position necessary to advocate for your child is really helpful. We had similar in primary school. Although I know that it's likely all the teachers won't all really get what my son's challenges are, there is someone in the school who's willing to put it across and to stand by my child. Having said that I found it very difficult to find out in advance what to do, even by querying with parents etc, as each experience is different. My gut feeling is that my son is wowed by good facilities (mac computers etc) and that in itself will feed into his feeling of wellbeing & esteem. He also will enjoy gaining more autonomy (and not feeling like a child) as time goes by. I don't know if my thoughts are of any use. But one thing I'm trying to do is to curb my own anxiety about the future. I'll see how things go and if it doesn't work we can try something else. Hopefully this will also help my son as he has an antennae that picks up on my moods like no-one else!

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  28. Thanks Alison for your comment and I wish your son the best of luck - it sounds like he is happy with the choice, and watching the progress of other children through secondary school, I think that that is very important.

    Here I've gone with the aspergers, as I don't think that he is ready yet to cope away from his friends in an environment that may not be that supportive, but with the possibility of moving him in a few years time x

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